AMDA- THE SOCIETY FOR POST-ACUTE AND LONG-TERM CARE MEDICINE

WHITE PAPER M16

SUBJECT: DEMENTIA IN CARE TRANSITIONS

INTRODUCED BY: AMDA TRANSITIONS OF CARE COMMITTEE

INTRODUCED ON: MARCH 2016

DEMENTIA IN CARE TRANSITIONS

 February 4, 2016

AUTHORS
Robert Burke, MD, MS
Cari Levy, MD, PhD, CMD
H. Edward Davidson, PharmD, MPH
Kenneth Boockvar, MD, MS
Karl Steinberg, MD, CMD
Wayne Saltsman, MD, PhD, CMD
Susan M. Levy MD, CMD, AGSF
Jose Gonzalez, MD, CMD
Rod Baird, MS
Manisha Parulekar, MD, CMD
James E. Lett, II, MD, CMD

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 TRANSITIONS OF CARE COMMITTEE,
A SUB COMMITTEE OF THE AMDA CLINICAL PRACTICE COMMITTEE
CONTRIBUTORS:

James E. Lett, II, MD, CMD, Chair

Wayne Saltsman, MD, PhD, CMD, Vice-chair
Kenneth Boockvar, MD, MS
Alice Bonner, PhD, RN, GNP
Edward Davidson, PharmD, MPH
Jamahl Demons, MD
Damien Doyle, MD, CMD
Jose E. Gonzalez, MD, CMD
Richard G. Lane, MD, FACP
Vishal R. Kuchaculla, MD
Susan M, Levy, MD, CMD, AGSF
Mary Mulligan, RN, BSN, MA, CDONA/LTC
Victor J. Narcisse, II, MD
Joseph Ouslander, MD, CMD
Manisha Parulekar, MD, CMD
Karl Steinberg, MD, CMD

The authors and the TOCC wish to acknowledge the support and efforts of the AMDA staff
members who contributed to this paper: Mary Mulligan, RN, BSN, MA, CDONA/LTC

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 Table of Contents

I. INTRODUCTION ..............................................................................................................................4

II. BARRIERS TO GOOD TRANSITIONS IN DEMENTIA ...........................................................................7

III. PREVENTION OF UNNECESSARY HOSPITALIZATIONS ...................................................................14

IV. MEDICATION RECONCILIATION AND MANAGEMENT IN PATIENTS WITH DEMENTIA ....................17

V. ELEMENTS OF A GOOD TRANSITION .............................................................................................21

VI. MEASURING THE QUALITY OF TRANSITIONS IN PATIENTS WITH DEMENTIA ................................23

VII. HEALTH INFORMATION TECHNOLOGY ........................................................................................26

VIII. COMMUNICATION IN DEMENTIA TRANSITIONS ............................................................................28

IX. HIPAA ........................................................................................................................................30

X. COMPETENCE AND CAPACITY ......................................................................................................31

XI. ADVANCE CARE PLANNING IN DEMENTIA ...................................................................................33

XII. THE IMPORTANCE OF HOSPICE CARE AND PALLIATIVE CARE

IN DEMENTIA PATIENT TRANSITIONS ....................................................35

XIII. SUMMARY AND CONCLUSIONS ....................................................................................................37

XIV. NEXT STEPS .................................................................................................................................38

XV. RECOMMENDATIONS ....................................................................................................................40

XVI. APPENDICES .................................................................................................................................41

XVII. FOOTNOTES .................................................................................................................................50

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 I. INTRODUCTION
The forceful consequence of dementia was referred to as a “tidal wave” at the First World
Health Organization (WHO) Ministerial Conference on Global Action Against Dementia in
Geneva, Switzerland, where it was estimated that 47.5 million people world-wide have dementia,
and that number is expected to double every 20 years.1 Today in the United States there are 5
million people living with Alzheimer’s Disease (AD) alone, with the number projected to rise to
some 14 million by 2050.2 The estimated impact of the Baby Boomers over the next 35 years is
that nearly 30 million will develop AD. 3

Despite the massive impact of those currently counted as having a dementing illness, the
actual incidence of cognitive impairment enumerated above may be only the tip of the dementia
iceberg. It is estimated that 27%-81% of cognitive impairment is unacknowledged in primary
care settings.4,5,6,7,8 American nursing facilities already provide a glimpse into the future of the
population at large. There are 1.35 million individuals living in nursing homes in the U.S., and
nearly half (48%) of nursing home residents have Alzheimer’s disease and related dementias
(ADRD) and 68% in 2009 had some degree of cognitive impairment.9

The challenges associated in those individuals who have dementia strain health and long-
term care systems. This stress will only intensify for Medicare, Medicaid and other involved
payers as the number of elders, and the resultant population of ADRD, grows over the next
decades. They utilize a disproportionate amount of health care resources. They are hospitalized
2-3 times as often as people the same age who do not have the disease.10 There is a significant
association for Medicare beneficiary hospitalization in those with dementia across chronic
disease comorbidities and disease pairings.11 Those with dementia have an increased number of
comorbidities along with and more serious comorbidity.12,13,14
Healthcare costs for persons with dementia are more than 80% higher than those for people
with heart disease or cancer in one study, with the costs over the last five years of life for patients
with dementia of $287,038.15 A likely source of enhanced costs in those with dementia is the
higher incidence of transitions with the resultant hospitalizations, duplicative testing, adverse
drug events, delirium and other eventualities due in part to deficient handoffs between care sites
or due to unnecessary transitions in care site. Older adults with prevalent or incident dementia
had higher Medicare and Medicaid nursing facility use, greater hospital and home health care
utilization, more transitions per person-year and more mean total transitions that those never
diagnosed with dementia. Additionally, of those with dementia with a re-hospitalization with 30
days, 45% had been discharged to nursing facilities from the index hospitalization.17 Another
study also revealed similarly increased readmission incidence with dementia. Hospitalizations of
beneficiaries with a dementia diagnosis were more likely to be followed by a readmission within
30 days, compared to hospitalizations of those of without dementia regardless of discharge site
of care.18 Burdensome transitions are common in those with advanced cognitive and functional
impairment, vary according to state, and are associated with markers of poor quality in end-of-
life care.19
The National Plan to Address Alzheimer’s Disease: 2015 Update, under Goal 2: Enhance
Care Quality and Efficiency, states that for the complex care needs of persons with Alzheimer’s
Disease and Related Dementias (ADRD), high-quality and efficient care depends on smooth
transitions between care settings, coordination among health care providers and long term

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services and supports (LTSS) along with dementia-capable health care and LTSS. Strategy 2.F
in that same title is to specifically “ensure that people with Alzheimer’s disease experience safe
and effective transitions between care settings and systems.” Nevertheless, a limited set of
specific information, guidelines and quality measures on the subject of the impact of dementia on
care transitions exists. This paper is envisioned to initiate an essential conversation regarding the
special needs of dementia patients during transitions, and how dementia influences key transition
decisions including a discussion of:
 Prevention of unnecessary transfers and unnecessary admissions to acute facilities
for those with dementia;
o Appropriate onsite interventions in nursing homes;
o Partnering with the busy Emergency Department to better meet the unique
needs presented by cognitive impairment without an unnecessary
hospitalization or observation stay;
 Early end-of-life discussions, their documentation and regularly updating them;
 Regular assessment of decision-making capacity of appropriate residents, and
respect for the person’s health care preferences;
 How dementia complicates the transition process, and the information exchange
involved;
 Appropriate medication management in cognitive impairment which can cause
inappropriate hospitalizations; and,
 Specialized nursing home “dementia units” which deliver more uniform, evidence-
based care, promote appropriate on-site interventions and reduce unnecessary
transitions.
The cognitively impaired person undergoing transitions must be viewed not with a singular
focus, but dually. Quality clinical care for the special needs and risks of this population is the
first pathway to their care. That approach will appear in the first three sections of this paper. The
second, and perhaps more important, need is for intense search for the “person within the
patient.” It is essential to elicit the wishes and instructions of the individual to guide the
interdisciplinary team to craft a care plan that meets those desires, and maintains the dignity of
that human being. The remaining portions of the work will address this perspective. Finally a
number of recommendations will be proposed that are envisioned to improve the quality of
appropriate transitions, and reduce unnecessary ones.
Nomenclature and Definition of the Problem
The AMDA Clinical Practice Guideline (CPG) on dementia (2012 update) defines
“Dementia” as “a syndrome characterized by progressive decline in multiple areas of cognitive
function, which eventually produces significant deficits in self-care and social, occupational, and
functional performance.” Dementia is not a specific disease but a syndrome comprising multiple
etiologies and the nomenclature reflects this diversity. Terms currently utilized such as
“Cognitive impairment,” Alzheimer’s disease and Related Dementias (ADRD), “dementing
disorders” and “Major Neurocognitive Disorder” will be utilized as synonymous with dementia.
The broader term of “Mental Status” is defined in that same AMDA CPG as “an individual’s
overall level of alertness, activation, and responsiveness to the outside world.” This paper will

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focus on dementia, reflecting permanent cognitive loss. It is anticipated that the principles here
can be extrapolated to other disorders that affect cognition.

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II. BARRIERS TO GOOD TRANSITIONS IN DEMENTIA
Although the perils of transfer from the hospital to a post-acute (PAC) care facility are
increasingly recognized, this peril is not shared equally among all patients.19-21 Rather, patients
with cognitive impairment may be most vulnerable during this time.22-25 The reasons for this
likely stem from an interplay of patient risk factors (impaired cognitive and functional status)25-27
and hospital and skilled nursing processes of care, including invasive interventions such as
feeding tubes,23,28 infrequent use of palliative care,29 and unsafe transitional care.21,30-32

Significant barriers to safe transitional care exist for cognitively impaired older adults.
These barriers are important to identify for three reasons. First, cognitively impaired patients
constitute a significant and increasing population of patients discharged to skilled nursing
facilities (SNFs). In prior work, 61% of nursing home residents with advanced dementia were
discharged to SNFs after hospitalization.33 As the population ages and more elderly patients are
discharged to post-acute care, this proportion can only be expected to increase.34-36 Second, there
is strong evidence that transitional care is frequently inadequate in this population. For example,
the Office of the Inspector General (OIG) found that 22% of patients transitioning from a
hospital to SNF experienced an adverse event, and 59% of these were preventable with better
care processes. The 30-day readmission rate from PAC facilities (26.0%) is higher than the rate
of patients discharged from hospital to home (19.6%)37 and is rising over time.21 Tools to
promote safer transitions have shown significant benefit in some populations, illustrating proof
of concept that transitions can be improved through better care processes.33-39 Third, clinicians,
are called upon to protect the most vulnerable. Perhaps there is no more vulnerable patient than
an older adult with impaired cognition transitioning to a PAC facility following acute
hospitalization. Their health, prior level of function and way of life are being challenged on a
fundamental level.40

Patients with cognitive impairment face unique barriers in transitions of care. After an
examination of those barriers, strategies will be proposed to prevent unnecessary transfers from
the nursing home to the hospital, a key contributor to poor outcomes in this population.41 The
Ideal Transitions of Care framework42 is utilized to systematically analyze barriers and identify
strategies to decrease transfers back to acute care as it has been validated43 and is derived from
position statements in both medicine and geriatrics.20,44 This framework consists of 10 domains
for general populations; seven of these are salient for cognitively impaired persons (Figure 1).

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Figure 1
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Barriers to safe transitions in the cognitively impaired

Domain 1: Discharge Planning

The first step in the safe transition a cognitively impaired older adult is correctly
identifying their needs and matching them to an appropriate PAC facility. However, selection of
patients most likely to benefit from SNF care is an inexact science.45,46 In fact, variability in the
use of PAC facilities is responsible for most of the variability in Medicare spending
nationwide.47,48 Evidence surrounding the efficacy of SNF care for patients with dementia is
mixed,49,52 and likely reflects variability of the quality of care provided.33,53,54

Patients and hospital providers currently lack sufficient information to appropriately match
patients to high quality PAC providers. Patients generally choose their PAC facility using
proximity as a guide, rather than a formal assessment of needs of the patient and quality of care
that can be delivered at that facility55The problem of selection of a PAC facility is particularly
relevant for patients with cognitive impairment, since they may require specialized care plans
and staffing. However, even if patients and providers were trying to choose a PAC facility based
on quality, tools such as Nursing Home Compare do not provide granular information
distinguishing facilities with high-quality dementia care. Additionally, these ratings are not
correlated with hospital readmissions from SNF, considered by many to reflect the quality of the
care received during the transition.40, 56

Current reimbursement systems also complicate effective discharge planning. A patient may
develop delirium during a hospital stay which could subsequently clear during the PAC facility
stay. However, there is not currently a mechanism to “delay” Medicare-supported rehabilitative
care until mentation clears and allow for more focused participation in rehabilitation and
therefore successful rehabilitation.57 Rather the patient may “fail to progress” and be readmitted
to the hospital or transitioned to long-term care before they can benefit from rehabilitation.58
Innovative models targeting rehabilitation to the individual needs of patients with cognitive
impairment are needed. In particular, recognizing the common occurrence of delirium in this
population is necessary given 14-16% of patients meet gold-standard Confusion Assessment
Measurement criteria on admission to PAC facilities and up to 50% have sub-syndromal
delirium.59, 60

A final emerging barrier to effective discharge planning is the rapidly growing number of
older patients being cared for by hospitalists.61 Hospitalists may have little knowledge of PAC or
its capabilities,62 leading to more discharges to PAC63 but perhaps less knowledge of how to
execute these safely.

Domains 2 & 3: Information Transfer (including completeness, accuracy, timeliness, and clarity
of information)
Two significant barriers exist to adequate information transfer in the cognitively impaired
patient. First, there is no uniform metric standardized in either the hospital or nursing home
setting to measure and communicate the current cognitive and functional status. Second, in the
absence of a knowledgeable historian of the patient, how can hospital staff ascertain a clinical
and mental status baseline?

These issues are particularly salient for delirium, and in particular hypoactive delirium,
which is under-recognized among elderly patients in the hospital and may only be discovered
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later in the PAC stay. 59,60,64-68 This leaves PAC facility staff unsure if a change of mental status
occurred, frequently leading to rehospitalization.24,25,31,52,69-74 However, even important
information such as the presence of dementia is often missing. In retrospective record reviews,
70% of discharge summaries do not contain any mention of mental status in those discharged to
SNFs; 67% of these patients had dementia.75 The lack of assistive devices, such as glasses or
hearing aids, which may contribute to the development of a delirium are rarely documented. In
addition, capacity to consent to treatment is infrequently documented, leaving considerable
ambiguity about who the decision-maker is when inevitable decisions about further treatment, re-
hospitalization, and discharge arise.

Many hospital physicians struggle to identify a PAC provider whom they could contact
during the transition.76 Similarly, PAC providers can find it quite difficult to identify a provider
in the hospital who is a point of contact to ask about the patient’s baseline mental status, goals of
care, caregiver support, and other issues especially relevant to the cognitively impaired
population.75 In the event that the discharging hospital has dictated discharge summaries, the 24-
48 hour turn-around means the patient has been receiving care in a facility for days without
accurate information about their medical conditions or trajectory. The poor ability of clinical
trainees to complete adequate discharge summaries has been well-described.77 Without a
discharge summary or a patient who can convey details of the hospitalization, these barriers may
cause disproportionately higher risk of incomplete care planning for cognitively impaired older
adults.

Domain 4: Medication Safety

In the OIG report on adverse events in SNFs, medication-induced delirium or other
change in mental status was the most common medication-related adverse event, responsible for
12% of all preventable adverse events reported. Medication effects leading to falls or other
trauma was responsible for another 4% of events.

While the challenges of achieving high-quality medication reconciliation during transitions

from hospital to home are well-known,46 where medication errors are also the most common kind
of preventable adverse event,78 these errors rarely cause harm, and thus even large randomized
controlled trials have failed to improve patient-level outcomes.79 However, medication safety in
nursing homes may be altogether different. While the barriers to achieving high-quality
medication reconciliation may be similar, the harm may be disproportionately larger.80-83 In the
transfer from hospital to PAC facility, there are two main medication-related barriers that are
particularly important in cognitively impaired patients: poor quality medication reconciliation
and inappropriate prescribing.

Compared to discharges home, where scant data exists on best practices,84 there is even less
data available about best practices for ensuring a reconciled, accurate medication list travels with
the patient to the PAC facility.85-88 Well-intentioned electronic medical records often are set to
populate the patient’s outpatient medication list at time of discharge, when the inpatient hospital
list may be more appropriate. Hospital-based clinicians may assume that a pharmacist and
physician will be reviewing the medications at the PAC facility, resulting in less oversight and
patient education than for patients being discharged home. Medications are frequently listed
without an indication or duration, and particularly for high-risk medications (pain medications or
sedating medications) the reason for an “as needed” order may not be clear. This is particularly

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significant for cognitively impaired patients, who have limited ability to participate in
medication reconciliation.
The second major issue is whether the prescribed medications are appropriate. Despite
development of multiple lists of medications to be avoided in older adult populations (e.g.,
Beers, STOPP criteria), evidence indicates these medications are still frequently prescribed.71,89-
92
Current quality measures for nursing homes may compound this difficulty.93 For example,
pain frequency and intensity of residents is a quality measure reported by Medicare on Nursing
Home Compare which may lead to over prescribing of pain medications.64

Domains 5 & 6: Educating Patients to Promote Self-Management/Enlisting Help of Social and

Community Supports
While cognitively impaired patients are unlikely to respond to an educational intervention to
promote self-management of disease, enlisting help of social supports may be particularly
important in this population. Although little published work is available, anecdotally it appears
that cognitively impaired patients who are accompanied by a caregiver in the hospital and PAC
facility sustain less harm and have better outcomes than those who are not. An activated
caregiver in this setting can help identify changes in patient status, encourage physical activity
that may be infrequent otherwise, advocate against harmful interventions, and anticipate barriers
to discharge. Further work is urgently needed to evaluate whether this anecdotal experience is
valid more broadly, to understand which characteristics of caregivers may be most important,
and identify how best to prepare or engage caregivers during most the transition to a PAC
facility.

Domain 7: Advance Care Planning

Increasing evidence demonstrates that highly invasive care provided to cognitively
impaired older adults can have substantial negative impact on health outcomes.23,28,29,94,95
Hospital and PAC facility characteristics contribute substantially to whether “do not hospitalize”
or other advance orders are written,29,96 and how invasive care provision is for these
individuals.53,54 Improved advance care planning is directly linked to increased utilization of
hospice and decreased hospitalizations in cognitively impaired older adults.97-103 However,
despite the predictable events that occur in dementia, timing of discussions about preferences in
the event of serious illness vary and are often delayed until a crisis occurs.104

Neither the hospital nor PAC facility may feel it is their primary responsibility to establish
goals of care; alternatively, providers in each care setting may assume the other will complete
these often difficult, time-consuming conversations.105 Few providers may be aware of hospice
criteria for advanced dementia or the availability of POLST forms to document advanced care
wishes.100,103,106 Clinicians may not know whom to approach to have advance care planning
conversations when formal capacity evaluation has not been completed and a surrogate decision-
maker is unavailable.

If goals of care are discussed, they are often not communicated across care settings and there
is a lack of uniformity in documentation formats for communicating goals of care.107 Do not
hospitalize and do not resuscitate orders are poorly communicated to SNFs and wide variability
in the presence of these orders across states suggest that regional practice variation is a powerful
determinant of whether or not these orders are written.96-108 Physician Orders for Life Sustaining
Treatment (POLST) and variations on these types of orders are improving uniformity across

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states but consistent use of this type of documentation and state registries has not yet been
achieved.98,109-111
Domain 8: Coordinating Care Among Team Members
The connection between the treating hospital clinician and the receiving clinician, or its
absence, is a known pitfall to providing high-quality transitional across care settings and PAC
facilities are no exception.76 This is particularly relevant because this connection might provide
the sole opportunity to discuss a cognitively impaired patient’s baseline and current mental and
functional status and for the receiving physician to provide feedback on the care plan prior to
discharge to the PAC facility, including the current cognitive state. Currently, there is no
mechanism for hospital-based providers to receive feedback on the outcomes on the patients they
discharge to PAC facilities to create a “learning health care system.”112 However, it may be even
more important for hospital nurses and therapists to be able to communicate directly with PAC
facility nurses and therapists, particularly for the cognitively impaired older adult. These
clinicians may have a sharper sense of the patient’s physical and cognitive function, presence
and involvement of caregivers, and effects of treatment given their consistent presence at the
bedside. We are unaware of any programs to coordinate “sign-out” between these clinicians and
clinicians at the PAC facility.

Domains 9 & 10: Monitoring and Managing Symptoms After Discharge/Outpatient Follow-Up
In the OIG report on adverse events in SNFs, failures of monitoring and managing symptoms
were one of the three most common categories of preventable adverse events. This may be
unsurprising as the patients being discharged from the hospital “quicker and sicker,” and in
higher volume than previously.17,113,114 In fact, PAC facility care could be substituting for a
longer hospital stay in some cases34 and nursing home staff may not feel equipped to know when
transfer back to a hospital is indicated.88,115 The presence of more staff (which may be more
prevalent in not-for-profit facilities) may improve monitoring and decrease hospitalization rates.
However, staff turnover is a major issue and increased acuity stands in stark contrast to staffing
at PAC facilities.116

Contrary to the views of many hospital-based providers and family members, there will
often not be a provider at the PAC facility ready to assess the patient as they arrive or titrate
medications on a daily basis. Though many states have more stringent requirements and a
common community standard is a physician visit within 72 hours of PAC admission, Federal
Medicare regulations simply describe that a physician visit is required within the first 30 days of
admission to a nursing facility117 Hence, there is commonly a large “voltage drop” in the
intensity of care provided across this transition. In the hospital, these patients often have vital
signs every four hours, hourly rounds by a nurse, and daily physician visits; in the PAC facility
physician visits will be less frequent and the majority of the care will be provided by certified
nursing assistants and licensed practice nurses.118-120 These providers may not have clear
directives on how to evaluate patient changes in status, when patients may require transfer to a
nursing home, or whom to call when a change in status occurs.88

Change of condition is particularly difficult to detect among cognitively impaired older

adults, who are likely to develop the types of adverse events cited in the OIG report: including
aspiration pneumonia, catheter-associated urinary tract infections, dehydration, falls with injury,
and exacerbations of their medical conditions from omissions of care. While some accountable
care organizations (ACOs) are establishing relationships between hospitals and SNFs, few
hospitals are aware of outcomes associated with the SNFs their patients are most commonly
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referred to following hospital discharge.121 As ACOs are increasingly held accountable for the
health of populations, collaboration with PAC providers will be a critical step in overcoming
many of the barriers described in the ITC framework including the monitoring and management
of symptoms throughout the discharge process.

Cognitively impaired older adults face significant barriers to safe transitions from the
hospital to PAC facilities in multiple domains. These barriers often overlap, interact, and as a
result are difficult to address individually. For example, a cognitively impaired older adult may
receive an inappropriate medication, resulting in aspiration pneumonia and development of
delirium, which is not discovered due to inadequate monitoring. Once finally discovered, the
wishes of the patient for hospital or ICU –level care may not be known without caregiver
involvement or advanced care planning. These barriers call for collaboration between hospitals
and PAC providers to integrate care on behalf of this vulnerable population and improve
outcomes.

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III. PREVENTION OF UNNECESSARY HOSPITALIZATIONS
Transfers from a nursing home or post-acute care (PAC) facility to the hospital are
common,122-125 may frequently be preventable,125-129 and are associated with adverse
outcomes.130 The extent to which these general findings apply to the vulnerable subpopulation of
cognitively impaired older adults is less well-understood.131 While nursing home residents with
cognitive impairment may be less likely to be hospitalized, 126,132,133 little evidence has evaluated
whether these transfers to the hospital are more or less “appropriate” or their effect on patient
outcomes. This is a difficult population to study, as large databases often are missing key
information about cognitive impairment. For example, dementia is often not coded as the
primary reason for a hospitalization (even if a comorbid condition), and delirium is frequently
under-recognized. However, since initial evidence suggests that provider characteristics, rather
than patient factors, play a large role in hospitalizations in this population,128,134, 135 there is an
opportunity to establish standards of care for these vulnerable adults and reduce unnecessary
transfers to the hospital for evaluation and treatment.

Risk factors for hospital transfer

“Potentially preventable” hospitalizations of nursing home residents have received
significant attention, though the method for determining what may be preventable differs. One
approach is to measure “ambulatory-care sensitive” conditions, though how these are defined
varies.136 Three studies using this methodology suggest: 1) hospitalizations due to these
conditions have remained stable over time;129 2) injuries with falls may be the most common
cause of these admissions,127 and 3) nursing home characteristics are associated with
hospitalization rates for these conditions. For example, the presence of nurse practitioners or
physician assistants at facilities was associated with reduced rates of hospitalizations for
ambulatory-care sensitive conditions.128

Others have relied on retrospective chart review, using physician reviewers and a
standardized template for determining how “preventable” a hospitalization was. Two studies
have been completed using this strategy, and both found a majority of hospitalizations are
preventable.137,138 The four processes of care found to be most commonly responsible for
preventable hospitalizations included: 1) poor detection and communication of changes in
resident status; 2) lack of prompt evaluation and treatment for a change in status; 3) preventable
complications of resident treatment (such as medication side effects or catheter-associated
urinary tract infections); and 4) lack of advance care planning.126,138

A final approach is to label Emergency Department visits by nursing home residents that do
not lead to hospital admission as “potentially preventable.” In a single study using this approach,
ED visits by nursing home residents were quite common (1.8 per NH resident per year in the
United States) but more than half did not require hospital admission. The most common
potentially preventable diagnoses treated was injury.125

None of these studies have evaluated preventable hospitalizations among patients with
cognitive impairment specifically – a significant gap in the literature. There are plausible
reasons to think reasons for hospitalization may differ in this population. For example, changes
in mental status or dementia-related behaviors may be more common reasons for hospitalization.
Best practices for responding to these changes or behaviors are also not clear.
Preventing hospital transfers
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 Preliminary evidence suggests that improved processes for identifying a change in status
early, communicating this clearly, and evaluating and treating in a safe and timely manner is key
for reducing hospitalizations in nursing home populations.137,138 It also suggests prevention of
catheter-related infections, medication side effects, and falls or injuries may be fruitful areas to
target.125,127,138 Finally, advance care planning may be particularly important in this
population.140 However, prior systematic reviews of interventions to decrease hospitalizations
from nursing homes have concluded that the evidence is poor and that no intervention has been
replicated or tested in another setting beyond where it was originally published.131 In this
context, it may be no surprise that cognitively impaired patients have been the primary intended
recipients of very few interventions to reduce hospitalizations. Several strategies for preventing
hospitalizations among cognitively impaired nursing facility residents are presented below.

Strategy 1: Proactively prevent potential complications

As patients are discharged from the hospital “quicker and sicker,” post-acute care
facilities are admitting patients who are more disabled and actively ill than prior.142-144 In
fact, nursing home care may be substituting for prolonged hospitalizations in some
populations.145 Older adults may be receiving more aggressive care once hospitalized,13 even
if they are cognitively impaired.135 Since these patients are more ill, may have more complex
medication lists and levels of invasion, and are more often cared for by non-geriatricians in
the hospital,146,147 more intensive monitoring and review of their care plan may be warranted.

This could be accomplished in several ways. One group found utility in a standardized
admission template, so all providers were reminded to evaluate treatments that had potential
to cause complications.148 Others find that the presence of “physician extenders” as a daily
presence in the nursing home decreased readmissions presumably through more regular visits
and monitoring.139,149 Several large private hospitalist employers have begun sending
hospitalists, referred to as SNFists, (confusing nomenclature as many specialists in skilled
nursing facilities refer to themselves by the same descriptor), into post-acute care (PAC)
facilities with the goal of improving outcomes, though evidence supporting this model is
currently unavailable. In the ECHO-AGE project, geriatric psychiatrists tele-consulted on
challenging cases of nursing home residents with psychiatric illness or dementia, and
facilities who participated reported decreased hospitalizations as a result.150

Strategy 2: Better identify, communicate, and evaluate changes in status

The main focus of the INTERACT program, created by Ouslander and colleagues, is to
enable front-line staff to better identify, document, communicate, and evaluate changes in
status of nursing home residents. This program includes education of all levels of staff, tools
and order sets, and structured forms of communication with the goal of reducing transfers to
acute care.151 Initial evaluation indicated that engaged nursing homes were able to
significantly reduce hospitalization rates.137 An attempt to replicate this finding in New York
resulted in non-significant trends toward decreased hospital admissions.152 This experience
validates the anecdotal experience of many in the long-term care setting: that staff turnover
and limited training are major barriers to implementing large-scale quality improvement
efforts.153

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 Strategy 3: establish robust advance care planning procedures
In a systematic review of interventions to decrease hospitalizations in the cognitively
impaired, the only interventions that demonstrated success were those intended to improve
advance care planning practices in the nursing home.140 Of the three interventions identified
in this category, two demonstrated reductions in readmissions.154,155 Another intervention
that combined a structured admission template, automatic palliative care consultation for
patients with more than 3 hospitalizations in the last six months, and monthly review of acute
hospital transfers was also successful in reducing hospital admissions.148 A final intervention
that prospectively identified nursing home residents at high risk of death and implemented an
advance care planning program for these residents demonstrated a massive reduction in death
in the hospital - 48.9% of patients without the intervention died in the hospital compared to
8.9% who received the intervention.156 These interventions suggest the most fruitful initial
step in reducing hospital admissions for cognitively impaired older adults is to engage in
robust advance care planning in the nursing home.

Promising future directions

The recurrent finding that falls with injury are a major source of potentially preventable
hospitalizations calls for standardized practice guidelines for evaluation of these injuries.
Providers at the nursing home may be concerned about liability if they do not send the patient to
the ED after a fall157 More than one-quarter of all nursing home residents sent to the ED receive
a CT scan while there, and over 70% are CTs of the head.125 Importantly, this rate does not differ
between those admitted to the hospital and those discharged, suggesting they were obtained as a
part of routine evaluation. This may be because, for example, four of the six clinical rules for
evaluating potential head injury include age >65 as a criterion for imaging. Robust geriatric
clinical rules for evaluating injury have the potential to significantly decrease ED utilization.

Caregivers and support people could be significant under-utilized assets in the care of older
adults in nursing homes, particularly for post-acute care.158 Anecdotally, frequently heard from
nursing home staff is that family concerns may be a driver of potentially preventable
hospitalizations, though no published research on this topic is identified. Conversely, these
caregivers could also lead to earlier identification of changes in status and improved advance
care planning if engaged and educated.

With the recent passage of the Affordable Care Act legislation, two major changes can be
expected to impact this area. First, penalties for all-cause readmissions from post-acute care
facilities will begin to be assessed.155 Second, value-based purchasing will begin to include post-
acute care. Hospitals will be measured on their Medicare Spending Per Beneficiary (MSPB),
including all costs from 3 days before hospitalization to 30 days afterwards.160 These will
combine to intensify focus on post-acute care and could serve to drive improvements in care, and
increased resources invested in reducing unnecessary hospital admissions from facilities.

16
IV. MEDICATION RECONCILIATION AND MANAGEMENT IN DEMENTIA

Medication management in older adults is becoming increasingly complex. Older

individuals take more medications than younger adults, and the rate is rising. Between 1988 and
2010, the number of adults aged 65 and older who reported taking five or more chronic
medications rose from 12.8% to 39%.161 The increased number of medications leads to a variety
of medication-related problems, including adverse drug events, many of which are
preventable.162,163 Individuals 65 and older are two and a half-times more likely to be
hospitalized for an adverse drug event than younger adults.164 Almost one in four older adults
discharged from the hospital to skilled nursing facilities for post-acute care experience an
adverse event, many (59%) of which are deemed preventable. Eleven percent of the events are
serious enough to cause harm, and 60% of these patients require hospitalization for
management.165 Older individuals, particularly those with dementia, transitioning into a nursing
facility are at increased risk for medication-related errors due to acuity, comorbidity,
polypharmacy and poor recall and insight into their own health history.

Polypharmacy, defined as medication use beyond a certain number of medications or use of

more medication than clinically indicated or warranted, is a significant contributor to adverse
drug events in older adults.162,163 It is also associated with increased use of potentially
inappropriate drugs, as defined by Beers criteria and others, and increased rates of hospitalization
in nursing home residents.166 The number of medications an individual takes, therefore, is an
important metric in assessing the risk of adverse drug events.

When older individuals transition between different health care settings medication
discrepancies, such as omissions, duplications, and dosing errors are common, occurring at rates
of 50% or higher in some studies.167,168 Other studies have shown that peer physicians often
judge many of the discrepancies to be preventable and to have a high-potential to cause harm.
These discrepancies can lead to adverse events, particularly in older adults and in those
transferred between acute and long-term care facilities.169 Such discrepancies increase the risk
for hospitalizations and re-hospitalizations among older adults.170

The patient medication list is a key part of the medical history of an individual, particularly
during transfers between care sites. However, older adults often have difficulty recalling their
medications. In a recent study of 99 older adult patients with no known cognitive impairment
who presented to a primary care practice, only 22% correctly named their drugs from memory,
and fewer than half (49%) were able to recall the number of drugs they were taking. In addition,
only 34% correctly named the medical conditions associated with their drugs.171 Individuals
with dementia had poorer performance on these items of recall.172 Incomplete medication
histories can lead to medication misadventures, with their consequent potential for avoidable
care transitions.

The act of medication reconciliation, properly performed, remains the lynchpin of quality
transitions. The most vulnerable, particularly those with impaired mental status, are the chief
beneficiaries. The World Health Organization (WHO) uses the following definition: “Medication
reconciliation is the formal process in which health care professionals partner with patients to
ensure accurate and complete medication information transfer at interfaces of care.”173 The
process of medication reconciliation involves comparing a patient's new medication orders to all

17
the medications that the patient has been taking, including non-prescription drugs and herbals,
over the counter drugs, and those that may have been brought into the facility by family or
others. The WHO High 5s Project developed several guiding principles that apply to medication
reconciliation implementation. (Appendix D, Table 1). The process of medication reconciliation
is depicted in Figure 1 in Appendix D. Medication reconciliation should be performed upon
every facility discharge and admission, and upon significant clinical status change.

Medication reconciliation is a multidisciplinary process, requiring the engagement of the

patient as well as family caregivers, physicians, pharmacists, case managers, and others to
effectively reduce the risk of medication errors. In combination with other transitions of care
interventions, hospitalizations and emergency department visits have been significantly
reduced.174 Pharmacist involvement in medication reconciliation in transitions between acute and
long term care settings has had limited study, but shows promise for improving outcomes,
including reducing medication discrepancy rates and hospitalizations.175 Further pharmacist
engagement in nursing homes will evolve with proposed regulatory changes, which include
specific attention to pharmacist-conducted medication review of individuals undergoing
transitions of care, and a periodic comprehensive medication review.176 Under current
regulations, the pharmacist mandated medication regimen review is often performed without
consideration of transitions in care and absent of medication reconciliation principles.

Although the overarching goal of medication reconciliation is to create an accurate

medication list, it is also an opportunity to identify medications that may be contributing to or
complicating cognitive impairment and discontinuing them. The steps involved in the process of
identification and removal of offending medications is often referred to as de-prescribing.
Although this activity is beyond the scope of routine medication reconciliation, it is essential for
individuals with dementia to minimize medication use.

Identifying Drugs Contributing To or Exacerbating Cognitive Impairment

Several classes of medications are known to cause cognitive impairment and complicate
dementia management. The most notable of these are drugs with anticholinergic properties (see
Appendix D, Table 2), which increase the risk of hospitalization for confusion, delirium, or
dementia in older adults177 It is important to keep in mind that while anticholinergic medications
individually may have only mild side effects, multiple medications with anticholinergic
properties can have additive or synergistic effects detrimental to those with dementia.
Benzodiazepines and sedative hypnotics with like properties have adverse central nervous
system effects, including confusion and delirium, and can lead to falls resulting in
hospitalization.178 Practitioners also need to be aware of the potential of other, often obscure
classes of medications, in causing incident delirium such as histamine receptor antagonists (e.g.,
cimetidine) and fluoroquinolone antibiotics.179

Table 2 in Appendix D provides a list of these medications and alternatives to their use for
individuals with dementia.180,181 While geriatric-trained clinicians would agree that fewer
medications are the better course for older adults, the risk for an adverse drug withdrawal event
needs to be considered when discontinuing selected medications and classes. However, studies
have shown that oftentimes medications can be discontinued without negative consequences.182

There are barriers to discontinuing medications. For the individual with dementia, the patient
and/or family caregivers may feel that medications are a proxy for engagement, and that they are
18
being abandoned by the healthcare system and providers with drug cessation.183 Here the art of
medicine comes into play. The clinician can reassure the patient and family that medication
reduction is good patient-centered care, that fewer medications will reduce the opportunity of
adverse drug events, and even potentially lower the chance for unnecessary hospitalizations and
readmissions.

Drugs with Questionable Benefit in Dementia

Medications used to treat symptoms or prevent disease progression present several factors for
consideration. The stage of dementia, life expectancy, time until benefit, the patients/caregivers
goals of care, quality of life, and treatment targets are all considerations when planning for
medication discontinuation.184 Individuals with advanced dementia, such as those who need
significant assistance with activities of daily living, have fecal or urinary incontinence, minimal
verbal ability, and are unable to ambulate, require special consideration as palliation of
symptoms is often the primary therapy goal. Table 3, Appendix D, provides a list of the
medications rated as rarely or never appropriate for individuals with advanced dementia, due to
questionable benefit and increased risk of adverse events.185 Clinicians should use this as a guide
to patient-centered care in these individuals, especially in light a recent study found that more
than half of nursing home residents with advanced dementia were receiving at least 1 medication
of questionable benefit.186

Off-label Use of Antipsychotics

Behavioral and psychological symptoms of dementia (BPSD) can be expressed in repetitive
speech, wandering, calling out and sleep disturbances. They are a core clinical feature of
Alzheimer disease and related dementias. Left untreated, these behaviors can accelerate disease
progression, worsen functional decline and quality of life of the person and produce significant
caregiver distress.187 Antipsychotic medications are not approved for use for behavioral and
psychological symptoms of dementia. Despite this fact, it is not uncommon to observe their use
for treating behavioral complications of dementia, even in the face of data showing these drugs
are known to increase the risk of stroke and mortality in this population.180 Despite these known
risks and a “black box” warning from the U. S. Food and Drug Administration, high levels of
off-label antipsychotic use continues to occur in the LTC setting.188,189 Approximately one
quarter to one-third of nursing home residents were prescribed antipsychotic therapy in 2011.190
In one study, 22% of residents with dementia who were prescribed an antipsychotic for an off
label use did not have behavioral symptoms and 29.5% had non-aggressive behavioral
symptoms.191 While in some instances, there may have been appropriate clinical indications or a
psychiatric diagnosis, in other situations these medications were used off-label to treat milder
behaviors symptoms as wandering. In other instances it was instituted for non-approved uses
such as “crying” or “resisting care” where its use constitutes a sedative or chemical restraint.192
Appropriate initial treatment for BPSD invokes non-pharmacological therapies before
consideration of psychotropic drugs. A discussion of non-pharmacological treatments is
available in the AMDA Dementia Clinical Practice Guidelines.

19
Educating Family and Caregivers
Family caregivers are typically responsible for medication management in the individual
with dementia, particularly in the home care setting. They may feel unprepared and at times
overwhelmed by post-discharge medication reconciliation and management.193 There is often
frustration and confusion about scheduling medications, reconciling new medications with old
ones, and understanding the purpose of each medication. It is important for providers to
recognize the burden of medication management and to provide or direct family caregivers to
information and resources, such as pharmacist-conducted comprehensive medication reviews, to
minimize the burden. Providers should assess the readiness of family caregivers to care for the
individual with dementia through individualized discussion or using an assessment tool.194

20
V. ELEMENTS OF A GOOD TRANSITION
The AMDA Clinical Practice Guideline, Transitions of Care in the Long-Term Care
Continuum outlines the steps in transitioning patients in the long-term care continuum. These
apply to all patients, including those with cognitive impairment. However, fastidious attention is
imperative when dementia is an involved diagnosis, either as a primary or secondary disease
process.
 STEP 1: The patient has a recognized status change.
Special issue(s) in dementia: in patients who have trouble communicating recognition of
a health status change may be delayed.

 STEP 2: Interdisciplinary team members communicate with each other and with the
patient/family (unit of care) to determine the most appropriate care transition.
Special issue(s) in dementia: patient may lack capacity and surrogate needs to be
contacted; patient may have advance directive to not to transfer to hospital.

 STEP 3: The sending facility or care entity communicates with the receiving entity.
Patient information received by entity prior to patient arrival.
Special issue in dementia: ensure accurate information about mental status and advance
directives are communicated.

 STEP 3A: The patient has an acute change of condition and transfer to an emergency
department is appropriate.
Special issues in dementia: ensure accurate information about mental status and advance
directives are communicated;
 STEP 3B: The patient is being transferred to another care site by emergency medical
services.
Special issues in dementia: ensure accurate information about mental status and advance
directives are communicated
 STEP 3C: Patient’s condition has improved to the extent that transfer to his or her
community home is appropriate.
Special issue(s) in dementia: ensure patient’s safety and care needs are met at home
 STEP 3D: Patient is approaching the end of life and comfort care only is appropriate.
Special issue(s) in dementia: confirm advance directives; educate on futile interventions
including CPR and feeding tubes.

 STEP 4: The patient is physically handed over to the receiving level or setting of care.
Special issue(s) in dementia: uncooperativeness, agitation, and aggression are common
in dementia patients at the time of transfer; investigate underlying etiologies such as
medication induced delirium and physical discomfort (e.g., pain from movement).
 STEP 4A: Patient is being discharged to his or her community home.
Special issue(s) in dementia: ensure patient’s safety and care needs are met at home.

 STEP 5: Both sending and receiving entities verify that the patient has been handed over
and that essential patient information has been received.
Special issues in dementia: confirm accurate information about mental status and
advance directives has been exchanged between sending and receiving facilities.

21
  STEP 6: Sending facility follows up to confirm that the patient has been successfully
transitioned to the new level or setting of care.
Special issues in dementia: confirm accurate information about mental status and
advance directives has been exchanged between sending and receiving facilities.

 STEP 7: Monitor the facility’s performance in managing care transitions.

Evaluate the efficacy of the facility in transitions; view potential quality indicators at
http://www.amda.com/tools/clinical/toccpg.pdf

Within the above steps it must be determined what specific actions within the transitional
care process are integral to quality transitions. The National Transitions of Care Coalition has
defined which actions denote appropriate care in all transfers, inclusive of patients with
dementia, which confer quality into the transfer activity and may reduce thirty day readmissions.
The “Seven Essential Intervention Categories” of quality transitional care:
1. Medication Management
2. Transition Planning
3. Patient and Family Engagement / Education
4. Information Transfer
5. Follow-Up Care
6. Healthcare Providers Engagement
7. Shared Accountability across Providers and Organizations
In-depth discussion of these interventions may be reviewed at the NTOCC website at
www.ntocc.org.

An especially concise process is warranted when the transitioning patient is cognitively

impaired. The sending site of care must contact the receiving site to insure the patient was
actually received and offer further data as needed. The receiving site is obligated to follow up on
any uncertain areas of information, and then act on the intelligence. Several items informational
areas must specifically be transmitted in the movement of the person with dementia:
1. Accurate mental status information. Such transmission should include at a minimum:
o Mental status abnormality present or absent;
o Features of cognition, including normal or abnormal alertness, orientation,
attention, and/or thinking (psychosis);
o Etiology of any present mental status abnormality or change, if known;
o Time course of a mental status abnormality or change, if present, including onset,
expected duration, and permanence.

2. Advanced directives information that is specific, updated and inclusive. Include: Advance
Directive information;
o Physician Orders for Life Sustaining Treatment (POLST) paradigm or equivalent
documentation;
o Instructions regarding resuscitation and intensity of interventions to be performed;
o Determination of patient capacity or incapacity; and, where the patient lacks
capacity, the person legally entitled to speak for the patient with contact
information.

22
VI. MEASURING THE QUALITY OF TRANSITIONS IN PATIENTS WITH DEMENTIA
Although NQF-certified measures and CMS quality indicators related to the care of nursing
home patients with dementia exist, they do not address the care transition itself for patients
diagnosed with dementia, delirium, or other cognitive disorders. There exists a need currently to
determine the elements of what a “good” care transition looks like for cognitively impaired
patients. Measures are required to evaluate the performance of individual medical providers and
clinical organizations in transitions. While the medical community is lacking specific parameters
to measure quality in the transitions of patients with dementia, several measurement domains
deserve mention.
Presence of a reliable determination of the presence, degree and duration of dementia when
patients change site of care should be scrutinized. Failure to accurately note acute changes in
cognitive status or inaccurately label patients with cognitive impairment greatly complicates
care. If the patient has dementia, staging that reflects the severity of the disease and its
functional impact should be documented. Periodic reevaluation at least annually, and at the
inception of a significant clinical status change, will provide the trajectory of the disease process.
Understanding progression allows for communication with the family regarding prognosis,
updating of advance directives and the appropriateness of aggressive interventions and allow
precise transfer information.
Medication management in dementia care and transitions is a centerpiece of quality care.
This subject is dealt with in depth in the “Medication Reconciliation and Management in
Dementia” section of this paper. Facilities and clinicians will find numerous measurements in
forthcoming federal initiatives. “Medicare and Medicaid Programs; Reform of Requirements for
Long-Term Care Facilities: A Proposed Rule by the Centers for Medicare & Medicaid Services”
on 07/16/2015195 invokes the Improving Medicare Post-Acute Transformation (IMPACT) Act of
2014 to propose requiring the hospital summary to include reconciliation of all discharge
medications with pre-admission drugs (Section 483.21). Section 483.45 recommends specific,
timed pharmacist reviews of the resident chart, focusing on psychotropic drugs and antibiotics
and additional reporting requirements by the pharmacist.

A further prime area to measure quality is whether there is timely transfer of accurate,
actionable information. Important data to transmit is that assessment for reversible causes of
dementia has already been accomplished. This avoids duplicate testing and allows a focus on the
acute problems. It is critical to clearly identify the patient mental status baseline along with any
deviation or progression. Transitional care documents should convey a core set of information on
the cognitive status including:
o Mental status abnormality present or absent;
o Features of cognition, including normal or abnormal alertness, orientation,
attention, and/or thinking (psychosis);
o Etiology of any present mental status abnormality or change, if known; and,
o Time course of a mental status abnormality or change, if present, including onset,
expected duration, and permanence.

23
 Few hospitals routinely perform standardized mental status assessments. This paper
advocates that their use become the norm. Nursing homes do utilize the tools embedded in the
MDS, the CAM and Brief Interview of Mental Status (BIMS), for mental status evaluation.
Measuring compliance in accomplishing and respecting advance care planning is a crucial
measure. These components must be in place to avoid cognitively impaired residents being
inappropriately returned for hospital care when such transfers conflict with their best interests or
previously expressed wishes.
Patient, family and caregiver satisfaction with the quality of the transition should also be
assessed. Evaluation of patient-centered care in transitions includes the performance, with
documentation, of patient and family education about dementia, its disease progression,
prognosis and alternatives of care. Prior work has validated the assessment of patient and family
preparation for post-hospital care as a quality measure.196

Potential Quality Measures for Dementia Transitions

Improvements in the care of dementia persons will best occur by promoting and measuring
actions felt likely to augment quality care. Examples of potential measurements to determine
quality in the care of dementia patients, and their transitions are listed below. This consensus-
based list is not validated, but is offered as a series of suggestions to evaluate dementia care.
 Each patient diagnosed with dementia is staged as to the severity of the disease during
each assessment.
 Periodic assessment of dementia status with a consistent (for the facility), standardized
tool is performed:
o Upon admission
o Annually, and
o With significant change in condition (hospital transfer, clinical intervention on-
site).
 There exists a permanent, specific site in the patient chart (or tab in the Electronic
Medical Record) for advance care planning information. Measurable elements on this site
could include the presence of:
o Properly completed Advance Directive information;
o Properly completed Physician Orders for Life Sustaining Treatment (POLST)
paradigm or equivalent documentation (in states where available);
o Properly completed Do Not Resuscitate (DNR) orders, or other instructions
regarding intensity of interventions to be performed;
o Determination of patient capacity or incapacity;
o Incompetence declaration (when performed) paperwork on the chart;
o Where the patient lacks capacity, the person legally entitled to speak for the
patient, along with contact information is documented; and,
o Advance Directives are updated annually, or when a significant change in status
occurs (i.e., hospitalization, or diagnosis of major illnesses such as malignancy)
 Education of the patient and family is performed and documented on the chart at least
once regarding
o Dementia disease progression and prognosis and,
o The potential impact of transitions on cognitively impaired patients.
24
 The facility transfer form transmits specific information on mental status that includes:
o Mental status abnormality present or absent;
o Features of cognition, including normal or abnormal alertness, orientation,
attention, and/or thinking (psychosis);
o Etiology of any present mental status abnormality or change, if known;
o Time course of a mental status abnormality or change, if present, including onset,
expected duration, and permanence.
 Documentation of the use of non-pharmacologic measures to address behavioral and
psychological symptoms of dementia (BPSD) prior to any use of psychotropic
medications.
 Annual staff education and training in recognition of, prevention of and non-
pharmacologic interventions to address behavioral and psychological symptoms of
dementia (BPSD).
 Annual staff education to address the special needs of dementia patients
o Potential for increased BPSD with new providers and a new site of care
o Need to provide in-depth information on mental status to a receiving clinical care
site
o Contact the new site of care to determine if questions exist as the patient will
likely not be able to provide information.

25
VII. HEALTH INFORMATION TECHNOLOGY (HIT)

In 2009 Congress passed the Health Information Technology for Economic and Clinical
Health (HITECH) Act. (Pub. L. 111-5, Division A, Title XIII, & Division B, Title IV) The
HITECH Act intention was to drive demand for the adoption and use of health IT with the
Medicare and Medicaid EHR Incentive Programs (also known as Meaningful Use). These
programs have already invested more than $31 billion in incentive payments to health care
professionals and hospitals that have, based upon whether usage is within the Medicare or the
Medicaid program, attested to adopting, and/or “meaningfully” using electronic health records
(EHRs) certified by the Office of the National Coordinator for Health Information Technology
(ONC)197
The majority of Americans’ health information is now stored in EHRs.198 The value of an
interactive, clinically viable EMR is tangible and inestimable as a repository for on-site clinical
information regarding mental status. When functioning as envisioned by the ONC, it will benefit
patients for its legible, accessible record of past interactions and efficiently transmit that
information across sites of care. Clinicians would likewise value it as a resource for the nearly
limitless availability of best practices and medical knowledge through the internet.
The promise, as opposed to the current value, is the potential to transmit patient-specific,
concise clinical information anywhere in the world in a timely and actionable manner. Regarding
dementia, such transmissions should include at a minimum:
o Mental status abnormality present or absent;
o Features of cognition, including normal or abnormal alertness, orientation, attention,
and/or thinking (psychosis);
o Etiology of any present mental status abnormality or change, if known;
o Time course of a mental status abnormality or change, if present, including onset,
expected duration, and permanence.
The keys to this potential of information sharing are the presence of interoperability, and use
of structured data.
 Interoperability is defined as the ability of two or more systems to exchange information,
and the ability of those systems to use the information that has been exchanged without special
effort.199
 Exchanging Structured Data encompasses two ideals. First, objective patient assessments
are captured using standard measures and nomenclature. Secondly, and simultaneously, clinical
observations which add context are incorporated so the individuality of the patient is preserved
and communicated.

There are numerous, well documented barriers to interoperability. Some of the more
prominent impediments and recommendations for resolution are noted in Health IT Policy
Committee Report to Congress: Challenges and Barriers to Interoperability (December 2015).200
Appropriate, accurate, timely data sharing to all members of the interdisciplinary team is the
essence that drives the coordination of patient care, including safe care transitions. Simply stated,
we are not there as a health care industry.
26
HIT in the Post-Acute/Care Long-Term (PA/LTC) Environment
If all EHR interoperability issues were solved, and EHRs were user friendly, hurdles would
remain for effectively managing transitions of care between a Skilled Nursing Facility (SNF) and
other sites of care. PA/LTC care is unique in the sense that multiple independent entities (i.e.,
medical groups, LTC providers, therapists and pharmacists) concurrently share care of the
patient. However, none of the current models for Health Information Exchange address this
concept.
Each of those service providers, must document care according independent regulatory
expectations. Designers of a ‘best practice’ for the transition must consider how a complete
picture of the patient’s care, and total plan of care can be captured and transmitted. At present,
the critical elements of that common patient are captured and stored in multiple, independent
locations:
 The Facility EHR which has existing standards for the use of Structured Data, and
contains information specific to the nursing care in a LTC setting (largely of low value to the
receiving physician, but important for a Home Health Agency or other community based support
services)
 The Attending Physician EHR, which is required to use Structured Data, and export in a
specific format. This summary is important to the receiving physician, but requires active
planning between the facility, attending physician, and community PCP to transmit.
 The Consulting Pharmacist – Nuances of medication management, and the rationale for
many therapeutic choices in the PA/LTC setting are documented in interactions between the
Consulting Pharmacist and the Attending Physician. There are no EHR/EMR standards for
consulting pharmacists, and their notes are typically unavailable.

Even the most effective transition involving patients with dementia, and other chronic
diseases, remains a high risk for adverse events. The use of EHR technology has great promise to
improve this process. However, without a keen appreciation of the need to coordinate multiple
documentations into a complete, pertinent summary of care and in a format effective to the
PA/LTC setting, that promise remains elusive.
Beyond repository and conveyance of patient health information, Health Information
Technology (HIT) offers promise in direct patient care and safety. One long-term care pharmacy
automatically generated risk assessment reports and automated monitoring plans utilizing a
clinical informatics tool with newly admitted nursing home residents at high risk with a
reduction in potential delirium onset, hospitalization and mortality201Another study determined
hypoglycemia can be detected through a clinical surveillance system utilizing a computer-
generated alert in the nursing home setting.202 Further promise arises with computer-based
medication reconciliation tools to reduce medication errors in the transition from the acute
hospital.203 These tools are especially beneficial for cognitively impaired patients, at such high
risk of adverse events due to the inability to often convey their symptoms.
While validation in the nursing home setting remains less than optimal, the potential for
decision-support and alerts for inappropriate medication prescribing as well offers true promise.
27
VIII. COMMUNICATION IN DEMENTIA CARE

Research suggests specific barriers that might be targeted to improve transitions for nursing
home residents with dementia. One study identified poor provider communication and
unexpected transfers as frequent barriers to effective transfers.204 Incomplete transfer documents
are a barrier, since such documents are often the only method of communication between
hospital and nursing home for patients with dementia. In one study205 older-age, female gender,
dementia, shorter duration of nursing home residence, and off-hours hospital transfer were
associated with less complete NH-to-Hospital transfer documents. For older adults, especially
those with cognitive impairment, mental status documentation and recognition of delirium are
important features of transitional care.206-210 Yet, in one study,211 mental status descriptions were
present in only 69% of transfer documents, and 67% of patients missing a mental status
description upon nursing home-to-hospital transfer had dementia. Even when present, mental
status descriptions have no standard format and use abbreviated phrases, such as “alert and
oriented,” with limited meaning. This is important because changes in mental status
characteristic of delirium are associated with adverse outcomes,212-217 and require specific
approaches to evaluation, prevention and/or treatment.218-220
Healthcare providers lack a tool to quickly assess and document mental status and its
changes. Mental status is best considered a “vital sign” akin to heart rate, temperature and blood
pressure in providing a clinical baseline. Significantly, in ill older adults and those with
dementia, changes in mental status may precede or supplant changes in traditional vital signs209
There are important challenges to development and implementation of a mental status vital sign.
First, mental status has multiple dimensions – e.g., consciousness, memory, executive function –
that have varying significance depending on the patient’s baseline cognitive function. Second,
cognitive assessment tools often require patient performance (e.g., digit span), and repeated
performance (e.g., every day or every shift) may affect patient responses. Third, in most
healthcare encounters vital signs are ascertained and documented by front-line nursing staff.
Development of a mental status vital sign would need to be constructed with this use in mind.
Reducing barriers to transitional care for nursing home residents with dementia would
require education and training of providers in a variety of settings and improving workflow to
increase efficiency and completeness of transfer communication. This might include 1)
flexibility in the technology providers use to communicate, 2) allowing providers to prioritize
information in transfer communications according to the needs of each patient and the
circumstances of transfer, and 3) holding facilities and providers accountable when transfer
communication breaks down. Given that sudden transfers are associated with greater barriers to
communication, nursing homes and hospitals need to institute protocols to reduce sudden, night,
or weekend transfers, and to increase communication consistency when unplanned transfers do
occur so that they are as effective as planned ones. Aspects of patient safety culture that can
hinder effective transfers include lack of feedback and communication about errors, punitive
response to error, lack of organizational learning or continuous improvement, and low
teamwork.221-222 Other studies 223-224 have found that absence of specialized geriatrics care in the
hospital is associated with worse inter-site communication and outcomes, including
inconsistency of hospital care with end-of-life preferences, a crucial aspect of care for nursing
home patients with dementia.
28
 The potential benefits of a mental status vital sign that is effectively transmitted to the next
site of care can be realized. However, it will require: 1) that barriers to reliable measurement,
documentation, and widespread utilization are overcome; and, 2) research to understand
organizational and cultural barriers be performed that may also help stakeholders predict whether
systems-level interventions are likely to work. The rapid growth of the dementia population will
demand that the barriers be overcome and the research be accomplished to efficiently and safely
transition patients with dementia through their chronic illnesses and the existing health care
maze.

29
IX. HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)
Coordinating care, and effecting safe, efficient transitions may be stymied by incorrect
understanding of the 2002 Health Insurance Portability and Accountability Act (HIPAA). The
Privacy Rule specifically states that it is not intended to interrupt the flow of appropriate clinical
information. However, overzealous or erroneous interpretations can impair communication. This
lack of clinical data sharing becomes even more crucial in the transition of those unable to
provide good personal health information due to cognitive issues. It is important that the
clinician have an understanding of HIPAA and utilize it to support transitions in patients with
cognitive impairment, and not allow it to be a barrier to that care.
Table 1 presents some examples of myths and facts about the HIPAA Privacy Rule. A
number of web sites offer reliable information to clarify common misconceptions about
compliance with the HIPAA Privacy Rule. See Resources for a non-comprehensive list of sites
that facilities may wish to consult for guidance.

TABLE 1 Examples of Myths and Facts about the HIPAA Privacy Rule
Myth
Practitioners may not e-mail colleagues about
patients.
Practitioners must refer to patients by their
medical record number, not by name, in e-mail
messages.
A provider or hospital must have a release
signed by the patient in order to provide test
results to another provider or hospital that is
treating the patient.
Prescriptions or insurance authorization forms
may not be sent by fax.
Practitioners cannot provide any patient
information to a patient’s family.
Fact
The privacy rule does not forbid
communication about patients by e-mail.
The privacy rule does not forbid the use of
patient names in e-mail messages.
Providers involved in a patient’s care are
permitted to freely share information for
treatment purposes without a signed patient
authorization.
The privacy rule does not forbid the faxing of
prescription or insurance information.
As long as a patient does not object, the
privacy rule permits practitioners to share
needed information with anyone the patient
identifies as involved in his or her care.

Sources: Lo et al, JAMA 2005; Fast Facts for Covered Entities, Fast facts for Covered Entities,
http://.gov/ocr/privacy/hipaa/understanding/coveredentities/cefastfacts.html

30
X. COMPETENCE AND CAPACITY
Every person, even with a diagnosis of cognitive impairment, is their own decision-maker
until otherwise appropriately determined. This section addresses those occasions when the
patient is declared as not able to make decisions in his/her own best interests. It is not created as
a legal document, but as a guide to assist the clinician in how to generally proceed in decisions in
regards to advance directives, transitions and clinical interventions for those with cognitive
impairment. State statutes vary so the clinician should have some familiarity with their individual
state laws concerning competence and capacity to function effectively in nursing home practice’

Competence
This is a legal designation, devoid of medical diagnosis. At the age of majority, which varies
by state, all persons are inherently competent to make personal decisions. If that ability is
challenged, a hearing is conducted by the court. Medical opinion may be sought by the court in
the decision, but removal of competence is a court decision. Only a court of law may reinstate
that competence. Once lack of competence is determined, decisions for that person are through a
court-appointed proxy, although it is expected that the proxy will consult with the resident to the
extent possible. Court documents will be available confirming this status along with the court-
appointed proxy to speak for the patient. There may be more than one proxy, as the court may
have one for healthcare decisions, another for financial matters, and even other proxies as it
deems necessary to protect the interests of the person lacking competence. Facilities should have
a copy of all related documents permanently installed on the clinical chart.
When told by the facility staff that the resident is “Incompetent,” ask to see the court
documents as this term is not infrequently utilized interchangeably with “dementia” and “lacking
capacity.” The difference is vital to appropriate determination of attempting or declining
interventions, including transition to another site of care.

Capacity
In contradistinction to “competence,” this status is a clinical one. Every adult is considered
to have decision-making capacity until properly evaluated and determined to lack it. The
presence of capacity, or its lack, is a conclusion by the examining clinician(s) of a person’s
ability to comprehend the decision – or decisions - at hand. There is no standardized instrument
upon which a threshold score indicates decisional capacity or incapacity. It is independent of
legal pronouncements and clinical tests. This clinical determination dependent on several factors:
the specific decisions being contemplated, the judgment of the clinician, and the recognition that
capacity may fluctuate both temporally and in relation to the subject under discussion. There are
excellent tools available for clinicians to utilize (such as the U-CARE method based on the work
of Grisso and Appelbaum) that may assist in the judgment. In general, if a patient is able to
understand the options before him or her, appreciate the significance of the decisions being
considered, use reasoning to weigh the differences between them, and express the choice—
preferably on a consistent basis over time—then the patient will be considered to have capacity
for that set of decisions. In complex cases, a formal mental health evaluation may be helpful.
Since capacity may fluctuate over time, or be related to the subject under discussion, supportive
documentation regarding decision-making ability should be part of the clinical record when
significant interventions such as hospital transfers are being contemplated. States may have a
standard format or document for the declaration of the presence or lack of capacity.
Which licensures may determine capacity, and the number of clinicians needed to do so will
vary between states. Generally speaking the nursing home attending physician or medical
31
 director should be able to determine the presence or absence of medical decision-making
capacity without having to invoke any mental health professional consultation. Determine the
applicable statutes in your state.

Key Concepts:
• A person can have cognitive impairment and have capacity
• A person can have cognitive impairment and be competent
• A person can be incompetent but not be demented
• A person can lack capacity but not be demented
• A physician can diagnose dementia, and can determine a resident to lack capacity, but cannot
judge competence
• The court can declare incompetency, but not diagnose dementia or determine capacity
• People retain the right to make what the interdisciplinary team (IDT) considers “bad decisions.”
Choices made with which the IDT disagrees are not, in and of themselves, evidence for a lack of
capacity.

32
XI. ADVANCE CARE PLANNING IN DEMENTIA

Advance Care Planning (ACP) is a keystone of the care plan for those with cognitive
impairment. Patients with dementia have lost, or over time will lose the ability to meaningfully
participate in decisions about their medical care. Optimal ACP will determine the personal goals
of care, attitudes toward medical interventions, and factors impacting quality of life while
decision-making capacity still exists and memorialize those determinations. This should be done
as soon as practical as all too often there has been no advance directive formulated for a
dementia patient by the time they are suffering from a more advanced stage of dementia. This
can leave family members—and health care providers—in a difficult situation.
Family members should be invited to participate in the discussions if the patient permits. If
not, they should at least be notified of the results of the conversation with patient consent. It
should never be a surprise when a family member discovers during a crisis that their loved one
has decided to opt for no resuscitation or no aggressive interventions including not to be
hospitalized. If a family member were to disagree with the patient decisions, or suggest that the
patient did not understand due to the dementia, confrontational and potentially litigious situations
may arise. Even more catastrophic, such disputes decrease the chances of honoring patient
wishes. (Note: Additional information on evaluating capacity is available in the
“COMPETENCE AND CAPACITY” section of this paper)
Having clear advance directives or appropriately executed Physician Orders for Life
Sustaining Treatment (POLST) paradigm orders in place that firmly document treatment wishes
of the dementia patient is essential. If the patient has made the decision to forgo aggressive
interventions, unnecessary emergency department visits, hospitalizations and re-hospitalizations
can be averted and allow onsite care in the nursing facility. A discussion with the resident and
family before a crisis arises is the best timing to discuss these issues, including the benefits, risks
and burdens of a trip to the hospital. Honest conversation can include that for vulnerable elders,
particularly with cognitive impairment, any trip to the hospital can have very negative
consequences including delirium, physical and chemical restraints, skin breakdown from
prolonged time on a gurney, intrusive exams by strangers, and other unfortunate, bewildering
events. If further hospital care is not consistent with the goals of care, appropriate
documentation and orders can be initiated.
State laws vary in the handling of the patient lacking capacity when healthcare decisions are
required. Some will allow a surrogate to make healthcare decisions on behalf of an incapacitated
resident, even in the absence of a valid Advance Healthcare Directive or Durable Power of
Attorney for Health Care. Additional states have a specific hierarchy for proxy choices (i.e.,
spouse, then child, then sibling and so forth), while others allow the person who best knows the
patient’s wishes (substituted judgment) to serve as decision-maker. Additional states allow the
interdisciplinary team to make decisions based on the patient’s best interest (with an Ethics
Committee type format), while still others may require action of the court system to provide the
necessary declarations. Thus, being familiar with the laws regulating the identification of a proxy
for patients lacking capacity is an essential tool in patient-centered care to honor patient wishes
in the dementia population.

33
 To allay confusion, and protect the rights of self-determination of the patient, this paper
recommends a permanent, specific site in the patient chart or distinct tab in the facility Electronic
Medical Record (EMR) for documentation on patient wishes regarding end-of-life care issues.
The presence and location should be part of facility staff in-services. It should be updated at least
annually, and in the event of significant clinical changes.
Clinicians who care for dementia patients should gain the skills to navigate such discussions.
There are very useful educational tools available, including the Decision Guides from the
Coalition for Compassionate Care of California (www.coalitionccc.org ), the advance care
planning section on the Interact website (www.interact.fau.edu), Five Wishes at
www.fivewishes.org, and Vital Talk at www.vitaltalk.org to name a few examples. More
generic advance care planning sites like prepareforyourcare.org and theconversationproject.org
can help in acquisition of the necessary skills. If the physician feels uncomfortable in this sphere,
consider alternative options. Perhaps the nursing facility has an exceptional member of the
interdisciplinary team who is skilled in these discussions or local availability of a palliative or
hospice team to involve.
One barrier to be surmounted is the confusing language utilized in advance directive
conversations. Loaded words as “selective” or “limited” treatment, “no heroics,” “comfort care,”
palliative care, hospice care, and many others build walls to understanding. Assisting the patient
and family through this vocabulary using simple, clear language and being able to interpret it for
the patient and family members making decisions on behalf of a loved one with dementia, is the
clinician’s goal.
Low-health-literacy, neutrally written informational materials can be invaluable in helping
families digest the complex material. Video tools can also be a highly effective adjunct. They
can be relatively brief, available in several languages and can be shown on a mobile device. One
such set of products can be viewed through Advance Care Planning (ACP) Decisions at
www.acpdecisions.org.
Make it a priority to discuss goals of care and advance care planning with every dementia
patient and family—as early as possible, and as often as necessary. Convene “Expectation
conversations” with patients and families soon after the diagnosis of dementia is made. Those
frank discussions can explore the likely clinical course of dementia, progression and decisions
which can be expected to arise. Issues critical to discuss include: 1) What to do when pneumonia
develops; 2) How to handle problems with nutrition and hydration, and 3) Whether or not to
hospitalize for worsening conditions.226

34
 XII. THE IMPORTANCE OF HOSPICE CARE AND PALLIATIVE CARE
IN DEMENTIA PATIENT TRANSITIONS

Elders with dementia not infrequently fare poorly after a hospitalization for acute illness or
trauma, with subsequent compromise in cognition and function. There is an increased rate, in
this population, for institutionalization in the long-term care space, worsening comorbidity and
mortality. Once begun, this functional decline often persists, and may even accelerate with a
higher risk of delirium, pressure ulcers, falls, untreated pain, agitation or adverse behaviors, and
incontinence, among others. Often, these events are rapid and surprising to the patient and
family. Without a plan of care to guide in subsequent management, clinical management can
become piecemeal and reactive, poorly serving especially the cognitively impaired patient.
Ideally, the goal is to have a plan of care in place to support goals and potentially other treatment
opportunities before an acute event occurs. Avoiding care based primarily on reactivity, provider
teams can utilize acute changes to initiate, or further critical conversations. Convene
“Expectation conversations” with patients and families as soon after the diagnosis of dementia is
made, and with acute changes in clinical status. Those frank discussions can explore the likely
clinical course of dementia, progression and decisions which can be expected to arise.227 Seeking
patient wishes with these dialogues allows that desired patient-centered approach to care that
may materially affect unnecessary transitions.
Palliative care, as defined by the Center to Advance Palliative Care (CAPC) is medical care
lead by a specially trained, multidisciplinary team that works together with provider teams, at
any point in the continuum of care, to establish an “extra layer” of support for patients with
serious illnesses, even during curative treatments. It focuses on establishing goals of care,
providing patients with relief from the symptoms and stress of a serious illness, and improving
the quality of life for both the patient and the family. It is a holistic and systemic approach to
care. Palliative care can help establish advance directives (i.e., the Health Care Proxy and other
key decisions) and can work with patients and families on generating and supporting goals for
life-sustaining treatment, including Physician Orders for Life Sustaining Treatment (POLST)
paradigm forms.
A key point is the distinction between palliative care and hospice care. Hospice is a specific,
defined Medicare benefit that provides multifaceted supportive multidisciplinary care for
terminally ill patients who have been assessed by physicians, and certified to have less than 6
months of life if their terminal illness progresses at its expected pace. Patients who receive
hospice care have a focus on symptom relief and quality of life rather than receiving curative
treatment for their underlying disease. Hospice is end-of-life care, where the focus is on quality
of life and symptom control rather than longevity. Residents on the hospice benefit are less likely
to return to the acute care setting as shown in a randomized controlled trial showing that offering
hospice in the NH setting reduced hospital transfers.228 Additionally, hospice in the nursing
home is associated with decreased hospitalization, reduced intensive care unit utilization and
fewer feeding tubes although no cost savings.229
There are specific guidelines as to who can qualify for the Hospice benefit regarding patients
with cancer, COPD, congestive heart failure, etc. The Hospice eligibility recommendations for
dementia include:
35
 1. Stage 7C or beyond according to the FAST Scale (ability to speak is severely limited and
ambulatory ability is lost without personal assistance), and

2. One or more of the following conditions in the past 12 months:

Aspiration pneumonia
Pyelonephritis
Septicemia
Multiple pressure ulcers (stage 3-4)
Recurrent Fever
Other significant condition(s) that suggests a limited prognosis
Inability to maintain sufficient fluid and calorie intake in the past 6 months

However, a patient with dementia, who has a life expectancy of less than six months, may
satisfy other specific, hospice guidelines and merit the benefit as well.
Currently, the most rapid growth in hospice participants is in long-term care facilities, with
dementia the most common diagnosis for entering hospice in long-term care. Entering the
hospice program requires patient and/or family/health care proxy embrace of the concept, as cure
no longer remains the goal. All end-of-life care in the nursing home is not within the Medicare
hospice benefit, although the tenets of reducing end-of-life suffering remain the same.
Palliative care, similarly to the hospice goals, is designed to relieve the physical and mental
symptoms of a disease process. While hospice is specifically enacted for the final stage of life,
palliative care symptom alleviation can be implemented at any point in a chronic illness
trajectory, and may continue in operation for prolonged periods of time. Patients receiving
palliation may still pursue curative or more aggressive treatment of the underlying disease
process. Embrace of this concept also requires an understanding of what palliation encompasses.
The dementia patient and the family should be apprised of the concepts of hospice and
palliation as soon as they are ready for that discussion. There does not need to have been a
specific, precursor event or medical issue to drive the discussion, although that typically is the
case. Initiation of the discussion is in itself a heralding event. Typically this is not a single
discussion, but a series of conversations that may require weeks, months, or even longer. There
should be no aversion to initiating the conversation. A randomized controlled trial of systematic
implementation of a program to increase use of advance directives in a nursing home setting has
been found to reduce health care services utilization without affecting satisfaction of mortality.230

36
XIII. SUMMARY & CONCLUSIONS
It is the conclusion of this paper that we, as a medical community, have a long journey ahead
to enhance the quality of dementia care, particularly during transitions. The basic clinical lexicon
appears perversely backwards for those involved in dementia care. Typically, transfer
information declares the primary and secondary medical diagnoses of the transitioned patient.
Meanwhile, cognitive impairment, often imprecisely or incompletely described, is relegated far
down on the diagnosis list as an incidental comorbidity, if at all. The dementia patient is then
shoehorned into the general population guidelines for Coronary Artery Disease (CAD), diabetes
and/or Chronic Obstructive Pulmonary Disease (COPD) which are inappropriate to adequately
address the core needs of the dementia patient. Post-transfer care plans often fail to address key
problems; i.e., the bewilderment involved in being transferred to a new site of care with new
caregivers who may not know of the presence of dementia and do not know the patient’s
personality, behavior triggers, likes, dislikes and habits; and, may introduce new, potentially
inappropriate, medications and interventions. Fundamental issues of dementia care often go
unaddressed: decision-making capacity, who speaks for the patient, advance directive decisions
about degree of interventions desired, appropriate medication management, avoiding delirium
and instituting non-pharmacological approaches to the distressed behaviors that regularly erupt
during transfers.
We advocate for a clinical paradigm where: 1) Dementia is not overlooked in clinical
documentation, for example, “Dementia, with acute exacerbation of COPD” for the transfer; and,
2) Unnecessary transitions, particularly to the acute setting are averted by appropriate
interventions on site.
As the international struggle to improve transitions - particularly with the metric around 30-
day readmissions to the hospital - continues, this paper suggests the issue of dementia in
transitions is particularly timely.
Impetus is needed to cause dementia and related cognition impairments to emerge from the
medical history backroom. Regular screening in high risk clinical sites, particularly in the LTC
care arena, for dementia should be part of every care plan. When discovered it should be
documented and monitored sequentially over time. Appropriate interventions should be instituted
for this relentless, progressive and often fatal disease. These may include pharmacotherapy, but
more pointedly include education for patient, family and interdisciplinary team of the dementing
process, future decisions that will be required and embedding patient wishes into the care plan.
As a medical community, as multidisciplinary patient care teams, and as a society much
is needed to insure quality in dementia care, and the frequent transitions that result. It is our
fervent hope that this paper will both add to that discussion, and trigger additional conversations
around safer, more efficient transitions when they are found necessary.

37
XIV. NEXT STEPS:
1. Seek out and appropriately document dementia and other cognitive impairment in
patients in the long-term care continuum, both upon admission and at appropriate
intervals thereafter.

2. Advocate for improving transitions for those with dementia across care settings that will allow
providers to measure and improve care, including but not limited to
o High-quality guidelines to guide the transition, and
o Bi-directional measures to evaluate transitions.

3. Provide care planning for the patient with dementia that is individualized, consistent, and
based on an appropriate assessment [AMDA Clinical Practice Guideline (CPG) on dementia
(2012 update)]

4. Transmit mental status information consistently as part of the core data set when a patient
is transitioned from one site of care to another. Such transmission should include at a
minimum:
o Mental status abnormality present or absent;
o Features of cognition, including normal or abnormal alertness, orientation, attention,
and/or thinking (psychosis);
o Etiology of any present mental status abnormality or change, if known;
o Time course of a mental status abnormality or change, if present, including onset,
expected duration, and permanence.

5. Utilize tools from AMDA and other appropriate entities to optimize dementia care for on-
site treatment whenever possible and in transitions when they become necessary. (See
Appendix A for a list of AMDA resources)

6. Advocate for the widespread establishment of “geriatric friendly” emergency departments to

appropriately evaluate the cognitively impaired in order to reduce iatrogenic harm and reduce
unnecessary hospital admissions and readmissions.

7. Establish a permanent, specific, prominent site in the patient chart, and/or tab in the
Electronic Medical Record for advance care planning information. This site would
include, but is not limited to:
o Advance Directive information;
o Physician Orders for Life Sustaining Treatment (POLST) paradigm or equivalent
documentation (in states where available);
o Do Not Resuscitate (DNR) orders, or other instructions regarding resuscitation
and intensity of interventions to be performed;
o Determination of patient capacity or incapacity;
o Incompetence declarations when performed;
o Where the patient lacks capacity, the person legally entitled to speak for the
patient, along with contact information; and,

38
 o Update all information at least annually, or when a significant change in status
occurs (i.e., hospitalization, or diagnosis of major illnesses such as malignancy)

8. Enhance awareness of the imperative to recognize the common occurrence of delirium in

this population, its diagnostic differentiation from dementia, its negative prognostic
implications, and the need to promptly address it,

9. Create a feedback mechanism for hospital-based providers to receive outcomes of

specific patients transitioned to post-acute and long-term care facilities. Lack of access to
such information inhibits quality improvement activities.

10. Establish Health Information Technology (HIT) platforms and standards for appropriate,
interoperable and timely information exchange for all patients.

11. Support appropriate and judicious medication usage for cognitively impaired patients,
especially psychotherapeutic medications, to reduce harm and unnecessary transfers to
the acute facility.
o Regular medication reviews, gradual dose reductions (GDR) when appropriate
and withdrawal of any medications without specific indications for their use.
o Antibiotic stewardship to prevent their unnecessary use and adverse
consequences.

12. Activate and engage families in the caregiving process

o Convene “Expectation conversations” (Levy C. Expectation conversations about the very
predictable events in advanced dementia. JAMDA 16 (2015)227 with patients and families
soon after the diagnosis of dementia is made. Issues critical to discuss include:
 What to do when a pneumonia develops
 How to handle problems with nutrition and hydration
 Whether or not to hospitalize for worsening conditions
o Educate providers and families of the importance of implementing a non-
pharmacologic response to behavioral and psychiatric symptoms of dementia
(BPSD).
o Seek out and address caregiver burden of care, both in the family and in facility
staff delivering care.
o Educate and activate the social supports of those with dementia to be actively
involved in transitions for the dementia population; i.e.,
 Accompany them, whenever possible, to a different site of care
 Provide crucial medical, social and advance directive information to
new/different practitioners
 Act as an advocate in providing substituted judgment and communicating
the patient’s known wishes or, if wishes are not known, make decisions in
the best interest of the patient.

39
 13. Embed risk adjustment for dementia, with its significant mortality, morbidity and
transitions into current value-based payment programs, and into subsequently developed
ones.

XV. RECOMMENDATIONS
We recommend the suggested next steps to be put before the AMDA Board of Directors.

40
XVI. APPENDICES
APPENDIX A: AMDA RESOURCES FOR CARE TRANSITIONS IMPROVEMENT
o Palliative Care in the LTC Setting Clinical Practice Guidelines
o Dehydration and Fluid Maintenance in the Long-Term Care Setting Clinical Practice
Guidelines
o Delirium and Acute Problematic Behavior Clinical Practice Guidelines
o Dementia Clinical Practice Guidelines
o Falls and Fall Risk Clinical Practice Guidelines
o Pain Management Clinical Practice Guidelines
o Acute Change of Condition in the Long Term Care Setting Clinical Practice Guidelines
o Know-it-All Before You Call©
o Know-It-All When You’re Called©
o Multidisciplinary Medication Management Manual
o Transitions in the Long-Term Care Continuum Clinical Practice Guidelines
AMDA’s NQF endorsed dementia measures to define and measure dementia in LTC

 Persistent Indicators of Dementia without a Diagnosis—Long Stay

o http://www.qualityforum.org/QPS/2091
 Persistent Indicators of Dementia without a Diagnosis—Short Stay
o http://www.qualityforum.org/QPS/2092

Transitions of Care:
AMDA White Paper: Improving Care Transitions between the Nursing Facility and the Acute Care
Hospital Settings (2010)
AMDA White Paper: Improving Care Transitions from the Nursing Facility to a Community-Based
Setting (AMDA White Paper, March 2009)
Improving Transitions of Care: The Vision of the National Transitions of Care Coalition (May 2008)
Cultural Competence: Essential Ingredient for Successful Transitions of Care (NTOCC White Paper)
Improving Transitions of Care with Health Information Technology (NTOCC White Paper, December
2010

41
Dementia:
http://www.prolibraries.com/amda/?select=session&sessionID=1073
www.prolibraries.com/amda/?select=session&sessionID=1067
https://www.amda.com/advocacy/demaddendum.cfm
www.amda.com/governance/whitepapers/A12.cfm
http://www.amda.com/news/releases/2013/pr_121613.pdf
http://www.amdafoundation.org/.../58-2013-amda-foundation-pfizer-qi-award- presentation-enhancing-
the-implementation-of-a-new-advance-direc...
http://www.amda.com/members/managementtools/amda_talking_points.pdf
http://www.amda.com/consumers/CultureChangeMar10.pdf
http://www.amdafoundation.org/index.php/foundation-library/.../file
First Diagnosis and Management of Incontinence in Older People with and without Dementia in Primary
Care: A Cohort Study Using The Health Improvement Network Primary Care Database (Robert L. Grant,
Vari M. Drennan, Greta Rait, Irene Petersen, Steve Iliffe, PLOS Med, August 2013)
Antipsychotics:
http://www.amda.com/advocacy/AMDA_Antipsychotics_Tlkg_Pts.pdf
http://www.amda.com/advocacy/amda_education_plan_antipsychotics.pdf
https://www.amda.com/consumers/antipsychotics.cfm
http://www.amda.com/news/.../AMDA_statement_on_ProPublica_Report.pdf
https://www.amda.com/advocacy/demaddendum.cfm
https://www.amda.com/advocacy/AP_package_070513.pdf
http://www.prolibraries.com/amda/?select=session&sessionID=
https://www.amda.com/tools/clinical/.../DementiaCPG_excerpt.pdf
http://www.amda.com/advocacy/legal/.../Summary%20for%20web.pdf
cpgnews.org/DE/MeasureTool-Dementia.pdf

42
APPENDIX B: HEALTH AND HUMAN SERVICES/CENTERS FOR MEDICARE
AND MEDICAID SERVICES TOOLS

Focused Dementia Care Survey Tools

https://www.cms.gov/Medicare/Provider-Enrollment-and-
Certification/SurveyCertificationGenInfo/Downloads/Survey-and-Cert-Letter-16-04.pdf

CMS Dementia Tool:

www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/Policy-and-
Memos-to-States-and-Regions-Items/Survey-and-Cert-Letter-16-
04.html?DLPage=1&DLEntries=10&DLSort=2&DLSortDir=descendingwww.cms.gov/Medicare/Provid
er-Enrollment-and-Certification/SurveyCertificationGenInfo/Policy-and-Memos-to-States-and-Regions-
Items/Survey-and-Cert-Letter-16-
04.html?DLPage=1&DLEntries=10&DLSort=2&DLSortDir=descending

Hospital Guide to Reducing Medicaid Readmissions

http://www.ahrq.gov/prefessionals/systems/hospital/medicaidreadmitguide/index.html
Publication # 14-0050-EF

Care Coordination for People with Alzheimer’s Disease and Related Dementias: Literature Review
https://aspe.hhs.gov/care-coordination-people-alzheimers-disease-and-related-dementias-literature-review

43
APPENDIX C: OTHER RESOURCES

The National Plan to Address Alzheimer’s Disease: 2015 Update:

https://aspe.hhs.gov/national-plan-address-alzheimer%E2%80%99s-disease-2015-update

References for use of HIT in transitions and in nursing homes:

 Culley CM, Perera S, Marcum ZA, Kane-Gill SL, Handler SM. Using a Clinical
Surveillance System to Detect Drug-Associated Hypoglycemia in Nursing Home
Residents. J Am Geriatr Soc. 2015 Oct;63(10):2125-9. doi: 10.1111/jgs.13648. Epub
2015 Oct 12. PubMed PMID: 26456318.

 Lapane KL, Hughes CM, Daiello LA, Cameron KA, Feinberg J. Effect of a
pharmacist-led multicomponent intervention focusing on the medication monitoring
phase to prevent potential adverse drug events in nursing homes. J Am Geriatr
Soc. 2011 Jul;59(7):1238-45. doi: 10.1111/j.1532-5415.2011.03418.x. Epub 2011 Jun
7. PubMed PMID: 21649623; PubMed Central PMCID: PMC3157676.

Smith KJ, Handler SM, Kapoor WN, Martich GD, Reddy VK, Clark S. Automated
Communication Tools and Computer-Based Medication Reconciliation to Decrease
Hospital Discharge Medication Errors. Am J Med Qual. 2015 Mar 9. pii:
1062860615574327. [Epub ahead of print] PubMed PMID: 25753453.

Bayoumi I, Al Balas M, Handler SM, Dolovich L, Hutchison B, Holbrook A. The
effectiveness of computerized drug-lab alerts: a systematic review and
meta-analysis. Int J Med Inform. 2014 Jun;83(6):406-15. doi:
10.1016/j.ijmedinf.2014.03.003. Epub 2014 Mar 29. Review. PubMed PMID: 24793784.

Act on Alzheimer’s
Tools, videos and resources
Actonalzheimers.org

American College of Emergency Physicians Geriatric Emergency Department Guidelines:

http://www.acep.org/geriEDguidelines

Alzheimer’s Association
www.alz.org

Society of Hospital Medicine

www.hospitalmedicine.org

Dr. Eric Coleman Website

www.caretransitions.org

National Transitions of Care Website

www.ntocc.org

Colorado Quality Improvement Organization Website

www.cfmc.org

Intervention to Reduce Acute Care Transfers (INTERACT)

http://interact.fau.edu
44
Physician Orders for Life Sustaining Treatment (POLST)
https://wmsa.org/POLST

Assessing Care of Vulnerable Elders (ACOVE) Measures

www.rand.org/health/projects/acove/about.html

Agency for Healthcare Research & Quality (AHRQ)

Care Coordination Measures Atlas

Available at the Institute for Healthcare Improvement:

www.IHI.org
Herndon L, Vones C, Bradke P, Rutherford P. How-to Guide: Improving Transitions from the Hospital
to Skilled Nursing Facilities to Reduce Avoidable Rehospitalizations. Cambridge, MA: Institute for
Healthcare Improvement; June 2013.

The High 5s Project Implementation Guide. Assuring Medication Accuracy at Transitions in Care:
Medication Reconciliation. World Health Organization. Version 4; October 2014. Available at
http://www.who.int/patientsafety/implementation/solutions/high5s/h5s-guide.pdf?ua=1

The Family Caregiver Activation in Transitions Tool © Eric A. Coleman, MD, MPH
http://caretransitions.org/fcat-tool-download/.

45
APPENDIX D: MEDICATION RECONCILIATION AND MANAGEMENT IN DEMENTIA
Figure 1. The Medication Reconciliation Process

Sources: The High 5s Project Implementation Guide. Assuring Medication Accuracy at Transitions in Care:
Medication Reconciliation. World Health Organization. Version 4; October 2014.

Kwan JL, Lo L, Sampson M, Shojania KG. Medication reconciliation during transitions of care as a patient safety
strategy; a systematic review. Ann Intern Med 2013;158:397-403.

Table 1. World Health Organization Guiding Principles for Medication Reconciliation

Principle 1. An up-to-date and accurate patient medication list is essential to ensure safe prescribing
in any setting.
Principle 2. A formal structured process for reconciling medication operates at all interfaces of care.
Principle 3. Medication reconciliation on admission is the foundation for reconciliation throughout the
episode of care.
Principle 4. The process of medication reconciliation is one of shared accountability with staff aware
of their roles and responsibilities.
Principle 5. Medication reconciliation is integrated into existing processes for medication
management and patient flow.
Principle 6. Patients and families are involved in the medication reconciliation.
Principle 7. Staff responsible for reconciling medications are trained to take a best possible
medication history and reconcile.

Source: The High 5s Project Implementation Guide. Assuring Medication Accuracy at Transitions in
Care: Medication Reconciliation. World Health Organization. Version 4; October 2014.

46
Table 2. Potentially Harmful Medications in Individuals with Dementia and Alternatives
Class Drugs Alternatives
Anticholinergics
Tricyclic Amitriptyline For depression – SSRI, SNRI, bupropion
antidepressants Amoxapine For neuropathic pain – SNRI, capsaicin topical,
Clomipramine gabapentin, pregabalin, lidocaine patch
Desipramine
Doxepin (> 6mg) Taper, time permitting, in the absence of delirium
Imipramine
Nortriptyline
Paroxetine
Protriptyline
Trimipramine
Antihistamines Brompheniramine Intranasal normal saline
Carbinoxamine Second-generation antihistamine (e.g., cetirizine,
Chlorpheniramine fexofenadine, loratadine)
Clemastine Intranasal steroid (e.g., beclomethasone, fluticasone,
Cyproheptadine over the counter)
Dexbrompheniramine
Dexchlorpheniramine
Dimenhydrinate
Diphenhydramine
Doxylamine
Hydroxyzine
Meclizine
Triprolidine
Antiparkinsonian Benztropine Levodopa with carbidopa
agents Trihexyphenidyl
Skeletal muscle Cyclobenzaprine For acute mild or moderate pain – acetaminophen,
relaxants Orphenadrine salsalate. Alternatively, ibuprofen or naproxen If no
heart failure or if eGFR > 30 ml/min and given with
PPI for gastroprotection if used for > 7 days.
Antipsychotics Aripiprazole For behavioral complications of dementia – if
Asenapine nonpharmacological approaches have failed, and
Brexpiprazole psychosis and danger to self or others, low dose
Chlorpromazine nonanticholinergic agents (e.g., risperidone,
Clozapine quetiapine) for shortest duration possible may be
Fluphenazine acceptable
Haloperidol
Iloperidone Taper gradually as tolerated
Loxapine
Lurasidone
Mesoridazine
Olanzapine
Paliperidone
Perphenazine
Quetiapine
47
 Risperidone
Thioridazine
Trifluoperazine
Ziprasidone
Benzodiazepines Short- and intermediate- For anxiety – Buspirone, SSRI, SNRI
acting For sleep – non-pharmacologic approaches,
Alprazolam including cognitive behavioral therapy, sleep
Estazolam hygiene, sleep restriction, stimulus control, and
Lorazepam relaxation techniques (see Ref Ann Long Term
Oxazepam Care 2010)
Temazepam
Triazolam Taper, time permitting, in the absence of delirium
Long-acting
Clorazepate
Chlordiazepoxide (alone
or in combination)
Clonazepam
Diazepam
Flurazepam
Quazepam
Nonbenzodiazepine Eszopiclone, zaleplon, As above, for sleep
hypnotics zolpidem Taper, time permitting, in the absence of delirium
Histamine-2 Cimetidine Proton pump inhibitor
receptor antagonist Famotidine
Nizatidine
Ranitadine
Sources: The American Geriatrics Society 2015 Beers Criteria Update Expert Panel. American Geriatrics
Society 2015 updated Beers criteria for potentially inappropriate medication use in older adults. J Am
Geriatr Soc 2015;63:2227-46.
Hanlon JT, Semla TP, Schmader KE. Alternative medications for medications in the use of high-risk
medications in the elderly and potentially harmful drug-disease interactions in the elderly quality
measures. J Am Geriatr Soc 2015;e8-e18.
Abbreviations: eGFR = estimated glomerular filtration rate, PPI = proton pump inhibitor, SNRI =
serotonin norepinephrine reuptake inhibitor, SSRI = selective serotonin reuptake inhibitor

48
Table 3. Medications Rarely or Never Appropriate for Individuals with Advanced Dementia
Rarely appropriate Never appropriate
Alpha blockers (e.g., doxazosin, terazosin) Acetylcholinesterase inhibitors
Antiandrogens (e.g., flutamide, finasteride) Antiestrogens (e.g., tamoxifen)
Antiarrhythmics (e.g., amiodarone, quinidine) Antiplatelet agents, excluding aspirin (e.g.,
Antispasmodics clopidogrel, prasugrel)
Appetite stimulants Cytotoxic chemotherapy (e.g.,
Bisphosphonates cyclophosphamide, methotrexate)
Bladder relaxants Hormone antagonists
Clonidine Immunomodulators
Digoxin Leukotriene receptor antagonists (e.g.,
Heparin and low molecular-weight heparin montulekast, zarfirlukast)
Hydralazine Lipid lowering medications (e.g., statins)
Mineralocorticoids Memantine
Tamsulosin Sex hormones
Warfarin

Source: Holmes HM, Hayley DC, Alexander GC, Sachs GA. Reconsidering medication
appropriateness for patients late in life. Arch Intern Med 2006;27:605-9.

49
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